epilepsy dad

Tag: fatherhood

  • The Perfect Storm

    The Perfect Storm

    My wife pulled up a picture of me from a year ago on her phone. At least, I think it was me. The face in the picture had the same thinning hair and the same gray beard, except it was wrapped around a much rounder face. I recognized the shirt that person was wearing because I had the same one hanging in my closet, but it fit much tighter on that person than it did on me.

    Maybe it was the angle, or maybe the picture was altered—people can do all kinds of things with AI these days. Either way, I was suspicious of the image’s authenticity because I was blessed with a fast metabolism. I was the same weight for most of my youth and a consistent, slightly heavier weight for most of my adult life. It didn’t matter how much I worked out or what I ate.

    “When you’re 25 it will change…”

    “When you’re 40 it will change…”

    But it didn’t change. Even if my routines or diet did, everything averaged out to keep me exactly where I was. As I said, I was blessed.

    But then I remembered that, around the time that picture was taken, I had my first physical since the pandemic. As I stood on the scale, the number that appeared was much bigger than I had expected. The lab work that came back also showed markers that led my doctor to discuss medication to treat high blood sugar and cholesterol.

    Maybe that was me in that picture, after all.

    Do you remember the movie The Perfect Storm with George Clooney and Mark Wahlberg? It’s about these fishermen who get caught at sea when a trio of storms merge into, well, a perfect storm.

    That’s what happened to me during the pandemic. The combination of the world shutting down and limited access to my regular physical activity, the stress and unhealthy eating choices that came with it, and the increased fear, anxiety, and depression from extreme isolation and watching my son deteriorate physically and emotionally combined into a storm that consumed me.

    Even after we moved out of the city and the world began to open up, I couldn’t find my way out of it. Even after we found a school for our son and he began to improve, I couldn’t find the motivation to change. The storm had knocked out my engines, and I was drifting at sea.

    My physical exam results were like the light from a lighthouse far in the distance. I was drifting, and they warned me of the rocky shore ahead. I had to decide whether to continue to drift in that direction or try to fix my engine. Like the fisherman at sea, I thought about my family, who depended on me. I thought about the adventures we’ve had and the ones ahead of us.

    I picked up a book by Peter Attia called Outlive that discussed longevity and living better longer—not just living longer but living the life you want in the future. I don’t want to be 80 and sedentary. I want to travel with my family and be able to put my luggage in the overhead compartment on a plane. I want to play basketball with my son, play tennis with my friends, and go on long walks with my wife and the dogs.

    According to the book’s philosophy, I had to consider my future and work backward to the present to prepare for the life I wanted. That meant changing my ways that led to the person I saw in that picture and who stood on the scale in the doctor’s office. If I wanted to continue to be there for my son and family, I needed to fix my engine.

    The timing of this post wasn’t intentional, but it is serendipitous. As we begin a new year, it’s a natural time to reflect on where we are and where we want to go. The world and our lives are stressful enough, and being parents of children with special needs adds another layer of complexity and challenge that often leads to exhaustion, feeling overwhelmed, and depression.

    The decision to change—even in small ways—can set us on a better path. Whether it’s prioritizing your health, finding balance, or being more present for your loved ones, the first step is recognizing the need for change and believing it’s possible.

    Here’s to a year of growth, resilience, and renewed purpose.

  • Rock On

    Rock On

    The image above was 10 years in the making.

    The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

    Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

    The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

    While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

    When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.

  • Better Than It Started

    Better Than It Started

    The new year is knocking on the door, which means it’s time to reflect on the previous year and look ahead to the next.

    It’s interesting to look back at the last 12 months at once. While we were in it, living each of the 366 days this leap year, we were busy transitioning from one moment to the next, moving from calm to crisis to celebration. Each moment seemed fleeting because as soon as it happened, we were forced to let go of it and be present in the next one.

    When we pause to reflect and look back, those little moments disappear, and we see only the big ones—the milestones that shaped and defined the year. We extract them as the major plot points necessary to understand how the story of our lives developed.

    This year, our story is one of addition. We added two more countries to our travel map. We added a family member as our goddaughter came to live with us, giving my wife and I a pseudo-daughter and my son a pseudo-sibling. The family expansion has opened him up in remarkable ways. Speaking of opening him up, my son added a new device to his collection, having surgery to implant a DBS in the fall.

    Our story is also one of resurgence as we started to dig out of our post-pandemic hole. We’re having more family meals together, and although we’re addicted to watching Holey Moley now at dinner, at least we’re doing it together. After too many years away from it, my wife joined a band this year and has been singing regularly. And after a spotty past few years, I’ve been posting regularly on the blog.

    I’ve also focused on my other creative pursuits. I took up drawing and have a project in mind for next year. I’ve also continued my French lessons and maintained a 5+ month streak in Duolingo. My son also picked up the language bug and also has an impressive Duolingo streak in Spanish.

    This year, I also worked on myself. Since the spring, I’ve worked out nearly every day, including a few hours of tennis per week and walking the dogs almost daily. I also have a healthier diet. As a result, I’ve lost most of my pandemic weight, which was caused by little exercise and little self-control in food choices.

    I’ve continued with my inner self, as well. With several significant personal and professional challenges this year, I’ve gained clarity on who I am, what I want, and what I can let go of, which has me feeling better than I did earlier in the year.

    Of course, better is subjective. On the inside, clarity in relationships can be better, even if, from the outside, it looks like the parties have moved further apart. It can remove ambiguity, simplify expectations, and provide clear boundaries and expectations, and that is better.

    Overall, we’re ending the year better than it started. I think I will sit in this reflection and re-read this chapter of our lives one more time to take it all in. With so many personal, professional, and political variables that will change next year, it’s impossible to predict exactly how the story will unfold. But if this year has taught me anything, it’s that growth comes from embracing the unexpected and finding meaning in the journey. As the new year approaches, I’m carrying forward the lessons, the love, and the momentum we’ve built.

    Here’s to another chapter filled with challenges to tackle, milestones to celebrate, and memories to cherish.

  • Shaped By Our Suffering

    Shaped By Our Suffering

    When we lived in Colorado, I would see trees on the edge of cliffs as we drove through the mountains. The wind and weather at that elevation could be brutal. But these trees would grow thick roots to ground themselves into the earth, even as their trunk and branches were bent and battered and grew angled towards the sky to withstand the constant pressure from the wind.

    I recently came across the phrase “shaped by our suffering,” which speaks to how difficult experiences can shape a person’s character, perspective, or life path. While painful and often unwanted, the idea is that suffering can lead to personal growth, resilience, and a deeper understanding of life.

    For as long as my son can remember, he has had challenges. He has had seizures, memory, attention, and learning difficulties. He was isolated even before the pandemic and, even now, is often on the outside of many social situations. He had so many dreams taken away from him before he could try to achieve them.

    Through it all, though, his challenges and struggles shaped him into a sweet, empathetic, resilient, and big-hearted person. Those are his roots, which ground him as a person and to this family and keep him from getting blown away by what he endures every day to be in the world.

    His struggles have also shaped me, forcing me to reflect on myself, my life, and my choices and develop a greater self-awareness. The months in the hospital while the doctors, nurses, and support staff kept him alive and rebuilt what he had lost changed my view on life, gratitude, and presence. The strength and grace he shows daily in the face of his challenges guide how I think about and approach challenges in my day.

    The hardship we endured as a family, which tried to tear us apart, formed deeper, stronger connections between my wife and me and in our family. Today, those roots continue to strengthen, ground us, and make us more resilient against whatever comes our way.

    Like the trees I saw in Colorado, we are shaped by the winds of our struggles. The storms we face may bend and scar us, but they also deepen our roots, making us more resilient and grounded in the things that truly matter. My son’s suffering has shaped him into a remarkable person with an incredible capacity for empathy, strength, and love. It’s taught me to live with more gratitude, to be more present, and to face my challenges with the same strength as my son.

    The hardships we endure don’t define us, but they shape us—and sometimes, they make us stronger than we ever imagined possible.

  • Repeating History

    Repeating History

    In case you haven’t heard, we have a big election coming up in the United States. To be fair, many countries are seeing their politics follow the same loud, divisive, truth-adjacent bullying trend that was made popular by the success of one of our “candidates” in 2016.

    It’s even worse this year.

    It’s also terrifying to think this is the world my son will grow up in.

    Candidates are being elected and staying in power by peddling fear and hate for the “other.” The easy group to target is immigrants. Falsehoods about their choice of protein and taking over small towns across the country continued to spread long after they were disproved. But it’s a slippery slope to go from immigrants to those who support immigrants to any group that is different or believes differently. History has not been kind to people like my son, for example. People with disabilities were lumped into the “other,” the inferior, and the unworthy of life.

    Too many people believe and repeat the blatant lies coming from these candidates, either because they align with the way they want the world to be or because we have lost the ability to think critically, question what we are told, and discover the truth for ourselves. Even when all the data and science support a particular fact, if it goes against what they want to be true, they’ll lean into their doubt. They’ll claim the other side and media are biased for saying the same thing (e.g., facts), and they’ll listen to the pundits in their echo chamber because surfacing “alternative facts” makes them “unbiased.” They think their doubt makes them clever. They’re mistaking cleverness for ignorance.

    They think their doubt makes them clever.
    They’re mistaking cleverness for ignorance.

    Single-issue voters are willing to look the other way and ignore the unpalatable aspects of a candidate as long as the candidate holds (or says they hold) the same position on a specific issue. “Sure, this candidate is a felon, racist, sexist, fascist dictator, but they’re pro-life, which is the only thing that matters.” Worse, they’ll combine their logic with the doubters above and try to justify their position by convincing themselves that the other labels are misunderstood, out of context, or “just politics.” They can’t believe someone who agrees with their position on a key issue could be a monster, even if the candidate only claims to agree to get enough votes to push a much more dystopian, self-serving agenda.

    This includes people who believe that our political system is broken and that bringing in an outsider is the way to fix it. If one candidate represents the establishment, regardless of their policies or fitness to lead, they won’t get the vote. Even in a crisis where the country would benefit from someone who understands the system, and even if the non-establishment candidate is unqualified, a criminal, incompetent, and dangerous, they believe that voting for and electing an outsider will make the country better.

    When I was in history class, we read about World War II and asked how a country could elect a party and a person who would ultimately commit such atrocities on the world. I couldn’t understand how millions of people could minimize or normalize the extreme rhetoric, the hate, and the violence. It seemed so unfathomable that anyone could look the other way or fully support their country’s direction.

    But here we are, nearly a century later, repeating history. People are spreading the idea that our country has lost its way and that we need to go back, that outsiders are a threat to our national identity, and that the other side is what will cause our country’s collapse. Fear, hate, us versus them—it’s the same playbook. And the party and its people are going along with it because it’s more important to win and be in control than to be good and do good. When you’re willing to win at any cost, humanity loses.

    It makes me wonder if, 100 years from now, students will sit in a history class wondering how we let this happen. They’ll have the benefits of time and hindsight to see the similarities between parties trying to make their countries great again at any cost because they were too focused on looking back at what they thought their country was instead of looking forward to what it could become.